None of us had any idea what he would say so as we entered Seattle on the sunny afternoon anything was possible. We turned right at the foot of the Mercer Street Exit off I-5. Now, where once St. Vincent de Paul's had been, a complex of newer brick buildings rose on the hillside. There in front of us was SCCA. It looked its part... it looked solid, and official. The curved walls of glass looking over Lake Union spoke of serious medicine happening there.
After parking and short elevator ride we enter a lobby where each person fills out a health form. No one is allowed in the area if they have a transmittable/active cold or infection of any kind. To prove we've been through the screening we each wear a blue label that says Tuesday and that we are "clean" for our visit. (Many here have suppressed immune systems, so no invasive germs are tolerated.)
We await our appointment in a waiting room with expansive lake views in recliner chairs. It is nice.
Dr. Chamberlain has just returned from a vacation scuba diving off Papua New Guinea. He has come in to meet with us because Elizabeth's tumor is unusual and the doctors in Tacoma want his opinion on how best to treat this "robber-of-well-being". He tell us it is very rare and when it is seen it is seen in children. The reason is the cells are the primitive cells that can become more specific cells later... children as they have not finished developing have more of these cells than adults. But adults have very, very few of them, so for what few are in an adult to become cancerous is rare as the cells are rare and add to that they then need to develop cancer. We find out that Elizabeth is one of two people (on average) that get this type of cancer a year. It is about 1% off all cancer. So we listen as he tells us that children being the most often seen people with this cancer, their treatment will help them set the protocol for Elizabeth. Children can tolerated better than adults radiation and chemo; he will recommend that Elizabeth use the same treatment as children with this disease. That will mean having both radiation and chemo. So we hear about how it will be made up of three chemicals and that she will need to be driven to Seattle to get her treatment. That this treatment will be given concurrently with the radiation. She will have much of her white blood cells killed, her immune system will be greatly compromised during treatment. She is told that she must insist that anyone wishing to visit her must be in good health... He stressed that. So everyone out there needs to hear this... NO runny nose. NO coughing (that would also be me right now), NO exceptions. If you want to see her you need to be in good health.
Elizabeth asks about all the needle injections and expresses how sore she already is from blood draws and injections of chemicals for scans and such. They tell her about a "port". This is a small flat reservoir that will be placed under her skin, if she wishes, that will lead directly to her heart. This arterial blood vein makes it easy to put the chemo chemicals in, and blood draws, and anything having to do with "sampling" her blood. She likes the idea of not being sore and having her arms bruised, so in a weeks time she will have a procedure that will plant this port under her skin so she doesn't have to endure the pain of chemicals entering her blood stream (you know the stinging/burning feeling some drugs can give you).
There is a binder with about 8 tabs that they give her to "look over". And suggest the family also reads it. It will answer many questions. The nurse hangs around a bit longer and we are all numb with TMI. I don't know how people without family (real or otherwise) do it. There is so much to take in. Elizabeth seems to have hit her capacity. And she says that she's hungry. We came all the way to Seattle... let's eat here.
Karyn, ever the proactive caregiver, has anticipated this and has brought two coupons for the Crab Pot on the waterfront. Yum. We head there with mouths watering hoping to slake our thirst for crab, shrimp, mussels, clams, and the corn-on-the-cob they put into the pot. We were not disappointed. It was very tasty.
To add to the day, Vanessa— Jim's sister (fka Liz) and her fiance join us for dinner. We have a nice time together and the visiting, laughter and good food is nice for all of us. If only we could "tele-port" back to Tacoma instead of driving. But alas, we must make the journey. We are all tired and as we part we tell each other that we're going to rest and watch the Olympics. Thank goodness for the Olympics. We all enjoy them so much.
Elizabeth's Mom... Kathryn
Elizabeth do not get bummed out on all the info. Don't think about it. Im usually bummed when I get a new job cause they tell you all the things you can not do...I feel so restricted! Then after I start the job it is never brought up again (unless you are doing all those things HAha) You have the lowdown on your rare cancer, now just forget all the tech stuff and concentrate on one appt. at a time. I know, and you know, you are going to beat this. Let the experts do all the heavy thinking.
ReplyDeleteI recieved my chemo through the vein on top my hand. It wasn't too sore. You probably will not lose all your hair, but enough will fall out that you will notice (not everyone will)When this is all over it will come back wavy maybe. Mine did. A lot of people I know that lost all their hair it came back curley. It's a crap shoot. At least now you know what is happening and the route you are taking. This is good. Im thinking of you and love ya bunches. yur ant pam